Chronic pain and your bodily image

My autoimmune disease, relapsing polychondritis (RP), involves destruction and sometimes movement of cartilage and tissue…everywhere. My nasal septum has moved off-center. My face is no longer symmetrical. My ears sometimes actually curl up, like morning glories waiting for the sun. But with my ears, it is usually sun exposure that has affected them. Some days, I am quite a sight to behold. I’ll bet you’re taking another look at my picture at the top of this blog. No, the changes are not that visible to those who don’t know me well, especially in a small picture, thank goodness. Many of the changes in knees, ankles and my sitter involve pain, thus this sharing that I do with all of you.

On one vacation we took, I had trouble with my cervical vertebrae so I had to wear a cervical collar, especially when riding in the car. I was also wearing a rib belt for limited mobility to protect an intercostal nerve and muscle that were inflamed at the time. I looked like Scarlet O’Hara with whiplash. In general, doctors don’t like rib belts any longer because they are afraid they promote shallow breathing which can end in pneumonia. Sometimes, I think they are very helpful for support if one remembers to take a deep breath every now and then.

Then there was the time I took Atabrine, one of the anti-malarial drugs that is no longer available. I think one of the ingredients came from India; it might have been a second cousin to curry because I was bright yellow after taking it. All my nurse and doctor friends kept trying to tell me I had jaundice. I just felt like a fat pumpkin most of the time. My hair is thinning from my disease. I have to wear sunscreen every day; therefore, my makeup starts sliding before it is set in place. I always wear a hat, in all weather, to protect my scalp and I generally look flushed from any sun exposure. My teeth are not nearly as pretty as they once were as some have cracked and shifted around. I’m not certain, but I think that all makes me look like an old character. Well, why not? There are definitely worse things to be. They are the signs of life, my life and the battle my body wages every day.

We live in a world that puts a priority on youth and beauty. Both are envied, sought after and emulated. Years ago, I worked for a group of plastic surgeons. I was intrigued by the fact that so many of the women wanting surgery aspired to look like Elizabeth Taylor. Today, I’m sure there are new “models” as so many of us seek to look the same. We seem to have forgotten what it is to be an individual and to just look like ourselves. Millions of dollars are spent on cosmetics, plastic surgeons and exercise equipment as well as gym memberships. Peer pressure is strong. Magazines, television and the movies continue to assault our senses with the importance of achieving the body perfect. Body perfect! YIKES. Who cares? I would just settle for body painless, body behaving normally, body non-physically challenged. I think I would just settle for my body behaving a little more friendly toward me.

As our friends who are challenged by chemotherapy can attest to, many medications can change the mirror image of that person who looks back at you in the morning. Prednisone can create that often dreaded “moon face,” “hump back,” and a larger midsection, moving our fat deposits around like a Swiss bank account. For me as well as some of my lupus friends, the sun can cause painful and colorful rashes wherever it sneaks through, giving us what some may believe is a healthy “glow.”

My daughter sometimes goes hat shopping with me, or used to. Now I do most of my shopping online. We used to have what we called the “laugh test.” If she laughed herself into near incontinence, then we knew it was not the hat for me. We’ve been almost thrown out of some of the best department stores. It brings a smile to my face as I write this remembering some of our hat buying antics. Just remember, the right hat can be very flattering to the wearer. I’ve come to love them as well as rely upon them.

What does all of this mean? I don’t know. I just felt like complaining about it. Don’t you? Living with an altered appearance isn’t always easy. As for me, well, I just choose what I can do something about and try to live with the rest. No, it isn’t always easy. Sometimes it gets me down until I get back on track and remind myself what is truly important to me. This change in my life, this journey that began twenty years ago, has caused me to re-evaluate what really matters to me. I have learned I cannot educate everyone I meet as to why I look a certain way. My idea of beauty has changed over the years and I would much rather be remembered for acts of kindness and inner beauty than outward appearances. If one lives long enough, they age accordingly, some of us more so than others. In some cultures, the elderly and the ill are cherished. I’ll settle for respect, understanding and love. I’m still working on that inner beauty thing, but I have my limits. I’m still not giving up my Clairol.

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ABOUT THE AUTHOR

Sue Falkner-Wood

Sue Falkner-Wood is a retired registered nurse living in Astoria, Ore., with her husband, who is also an R.N. Sue left nursing in 1990 due to chronic pain and other symptoms related to what was eventually...read more